Rebekah was pink at birth. The only negative I heard was that she was an 8 out of 10 on the scale they judge the quickness for babies to turn pink. The pediatrician wasn’t concerned because it was not "unusual." I didn't know what a pulse oximeter was in 1985, and I don't remember ever seeing one when in the hospital following her birth. I do know that when she had her first surgery at 8 months, a pulse oximeter was placed on her foot, so I know they existed. Had one been available, I have to believe Rebekah would have been diagnosed before we left the hospital to bring her home.
She was born January 31st and never cried much. We thought it was because there was always someone close by to take care of her and she was a calm baby. On Easter Day my brother and his wife came to celebrate, and Rebekah cried at some point. My brother jumped at the chance to see her and went to her room to check on her. He came out with her and said, "Why is she so purple?"
We had not noticed it previously. I was later told that one part of her heart’s very complicated structure had compensated enough that it had covered for the very serious problems she had. We immediately got her into the pediatrician who noted that she was not keeping up weight wise and referred us to Columbus Children's Hospital. She had just turned 5 months old when we first went to see a cardiologist there and he diagnosed her with Transposition of the Great Arteries as well as having a Ventricular Septal Defect, an Atrial Septal Defect and other concerns.
By the age of 5 months she had already passed the ideal age for a baby to have open heart given the structure of her heart. They chose to do a palliative procedure--the banding of her pulmonary artery--this was to hold her until she absolutely would need open heart. What we learned through time was that the structure was causing Pulmonary Hypertension and once it develops, complete correction of her heart was not possible. The only good solution would be a heart/double lung transplant.
When she did go into "Failure to Thrive" she was almost 5 years old and there was really no good solution--heart transplants had horrible success rates for those under 18 so the cardiologist searched for a willing surgeon to try something. Dr. Bove at the University of Michigan was willing to try a fairly new procedure, a Jantene Arterial Switch -and even then he had to leave her heart in a position that would minimize the Pulmonary Hypertension and the VSD was left open.
With development of Pulmonary Hypertension drugs, Rebekah is living today with oxygen stats in the low 80's, she is cyanotic quite a bit and constantly watches for signs of Congestive Heart Failure, which she has had four times. Recently a fistula was discovered that had formed after a catheterization and following it's correction she has not had further bouts of CHF. She does not use oxygen - and is not restricted except that aerobic exercise of any type is out of the question.
If a pulse oximeter had been used when Rebekah was born, a diagnosis before leaving the hospital might have meant the Pulmonary Hypertension could have been avoided by immediate surgery and perhaps her health would not be anywhere near the issue it is today.